Lupus Patient `An Inspiration'

Boca Raton resident Donna Posigian-Flynn was diagnosed with the autoimmune disease lupus almost 20 years ago. She spends much of her time confined to a wheelchair.

She has spent time working for banking, real estate, accounting and engineering firms. But now, having been told by doctors her condition is terminal, she fills her days by helping youths in the community of Amberwoods deal with pressures in their lives.

"It affects every facet of your body," she said. "When there's inflammation, it can destroy tissue. That's why people can die from it."

Flynn said nearly a year ago she felt "useless," and spent the days she was well enough to go out roaming the streets of Amberwoods in her battery-powered wheelchair, often carrying some of the stray rabbits she had been raising.

The rabbits would draw neighborhood kids toward her, and Posigian-Flynn took the time to talk.

She quickly became a role model and mentor for nearly two dozen youths, ranging in age from 13 to 23.

"This just developed by itself," she said. "I never intended for it to happen."

Posigian-Flynn said she discusses many things with young people, from the day-to-day issues of how to pay bills, use the Internet and care for a home, to the more difficult ones of drugs and birth control.

A number of children visit her house daily, between the hours of 2 and 11 p.m.

Sean DeVine, 17, a junior at Spanish River High School, said he was "amazed" that Posigian-Flynn took time to speak with him.

"I don't have many adult friends," he said. "She opened herself to us and let us into her home."

DeVine said Posigian-Flynn urged him "to go to school more," and that her influence has helped his studies improve.

"She's just a really cool person," DeVine said.

He said Posigian-Flynn has also helped a number of neighborhood children with the way they communicate with others.

Lauren El-Sheikh, 16, who also attends Spanish River, said she owes Posigian-Flynn a lot. She said Posigian-Flynn is accessible and has "always told us the truth."

El-Sheikh said Posigian-Flynn has assisted several young people with parental and financial difficulties, as well as with relationships.

Posigian-Flynn has a disease that afflicts nearly 2 million Americans, said Fredda Steidle, outreach coordinator with Delray Beach's Lupus Foundation of Southeast Florida, a branch of the Lupus Foundation of America, Inc.

Women are affected 10 to 15 times more frequently than men. The condition is chronic, although the disease may become active and dormant for certain periods of time.

Steidle, who has had the disease for 14 of her 35 years, said the severity can also vary.

Posigian-Flynn, 36, was first diagnosed when she was 17.

During the first decade with the illness, lupus left her with joint pain and fatigue, but in the years that followed her condition worsened, forcing her into several hospital stays for nearly uncontrollable fevers, which she said occur every two or three weeks.

She has also had a number of seizures.

Two hip-replacement surgeries related to her illness have forced her to make use of the wheelchair, although she can walk short distances and drive.

She is attempting to rehabilitate from surgery by swimming, but said she acknowledges the severity of her condition.

"I've been told I'm terminal," she said. "I don't expect to be on this earth another five years."

According to Steidle, lupus "causes your body to turn against itself. Your immune system can't differentiate between good cells and bad cells."

Steidle said lupus affects more people than muscular dystrophy, multiple sclerosis and AIDS combined, but has not been widely publicized.

There are three forms of the disease. One of them, discoid lupus, causes skin rashes.

Another, a drug-induced form, can be brought on by certain medications. Unlike the other two forms, symptoms disappear when the medication is discontinued.

Posigian-Flynn's illness, systemic lupus, can strike the body in a variety of ways.

Steidle said up to 90 percent of those diagnosed with lupus can live "a fairly normal life span" with medications.

Posigian-Flynn is taking the steroid prednisone, which helps reduce inflammation and control fever, but destroys bone mass and skin.

"I can't seem to keep this in check," she said. "Most people seem to go into remission, but I've never had one."

Still, she said, she has found meaning and purpose counseling neighborhood kids.

"I wanted to leave my mark on the world somehow, and the greatest way I thought I could do so was to change the life of a child," Posigian-Flynn said.

Posigian-Flynn's husband, James Flynn, said helping children is the best outlet possible for his wife.

"I think she provides a tremendous service," he said. "It has benefits for her and the children."

In addition to helping kids in her neighborhood, Posigian-Flynn is working with Forever Springs Collaborative, a group that seeks to improve conditions in the workplace, and Revolution Consulting, which creates mentoring programs and combats gangs and crime.